A forum for family, friends and carers of pancreatic cancer patients

Moderator: volmod

Forum rules
Please see the messages in our "Rules" section

The posts on this discussion board are made by members of the General Public and are not intended to constitute medical advice
Posts: 4
Joined: Sun Sep 15, 2019 9:53 am

Four week nightmare

Postby Winnieweg » Mon Sep 16, 2019 9:55 pm

I found this website and forum a month ago, August 17th, a Saturday..... Mum had a tummy upset and we noticed she looked a little yellow in her eyes. Nothing else, just that. Her GP sent her to AAU to get checked out. I was with her all day and as the tests increased, the ultrasound became a CT scan, the questions started getting more and more specific, I knew.
I found this site and read up all I could. I applied for a 'newly diagnosed' pack, little did I know I'd never get the chance to even read it.
We got her diagnosis, we awaited the MDT meeting decisions and in the meantime an ERCP was performed. That happened a week later. What a weekend!! Poor mum. She was grey, sweaty and diarrhoea, OMG, I have never seen anything like it, it was horrendous.
Three days later, still awaiting MDT to happen, she got a UTI, gp gave antibiotics. The consultant called, it was a bank holiday, the MDT would be a week late. He wanted her taken to go to check right lung as shadows suggested tumour/ infection? Gp wasn't sure so swapped to broad spectrum antibiotic.
Sudden onset of intense neck and shoulder pain meant gp again. This time morphine and codeine. Still no MDT results. We are two weeks in now.
Mum lives alone but close by so I was visiting three times a day to do meals and meds. With Creon she was eating well. Neck pain increased so gp changed to slow release morphine plus oral morph. We had a clinc date, finally, the Friday of week three.
On the Tuesday morning I found mum collapsed and unconscious. Rushed to hospital and found to have massive pneumonia in the right lung. Consultant said it was going to be a rough ride. Heavy duty antibiotics made mum really sick and weak.
The Friday came, I went to see consultant for the results and to hear what could be done for mum, but was told it was all now irrelevant, pneumonia was winning. They withdrew treatment that day, end of week three. Week four was spent living in the hospital with mum, caring for her and watching her slowly disappear into the morphine, weaker and weaker, not eating or drinking until last Saturday morning, September 14th, a month to the day, she left this life, holding my hand, and I watched, as her heart stopped beating, a single tear roll down her cheek.
I cannot describe what I'm feeling at this time. I'm tearing myself apart with recriminations, things I think I could have done better, should have known, should have fought harder.
Her face is forever etched in my mind, that tear will haunt me forever.
Cruel, cruel disease, took her so fast, I'm broken 💔

Posts: 12
Joined: Wed Feb 20, 2019 9:23 pm

Re: Four week nightmare

Postby Borobi » Mon Sep 16, 2019 10:19 pm

Dear Winnieweg

I’m so sorry to hear of your mum’s rapid decline and death. Pancreatic cancer is a very cruel disease and I know that large numbers of people are diagnosed so late that they die really quickly, before any effective treatment can be given.

I hope you have close family and friends who can help you and care for you at this difficult time.

Eventually you’ll be able to remember the good times with your mum. Just hang on to that, and be relieved that her suffering is over.

I know the nurses on the helpline can be very helpful and you might want to give them a call. And I’m sure some other members on here who have also lost parents will have some wise words. You are not alone.

Best wishes.

Posts: 4
Joined: Sun Sep 15, 2019 9:53 am

Re: Four week nightmare

Postby Winnieweg » Tue Sep 17, 2019 7:47 am

Thank you for your kindness and for reaching out to me.

Mum was 83, spritely and going on cruises with her friend several times a year, she was loving living.

I have a sister and two brothers, all live close by, we are trying to hold each other up but it's become a little like using jelly as a bin liner.

I know it's early days and I need to give myself time, I have a funeral to arrange and her bungalow to clear so I can't even begin the process yet.

How I'm going to go back to her home I don't know, the last time I was there I found her collapsed in her bedroom and she left it on a stretcher.

How do you deal with all the normal everyday things that were her life.

One day at a time I guess.......

PCUK Nurse Jeni
Posts: 1101
Joined: Mon Jun 14, 2010 1:30 pm

Re: Four week nightmare

Postby PCUK Nurse Jeni » Tue Sep 17, 2019 3:52 pm

Hello Winnieweg,

We are so sorry that you have found the website and forums in such devastatingly sad circumstances.

Please accept our sincere condolences at your sad loss. Your mum sounds like she was an amazing lady. I am sure it is hard to take in all that has happened in such a short time.

Can I ask, are you getting any professional help at all? Have you talked to your gp about some bereavement counselling? I appreciate that its early days and that you have busy times coming up with the funeral preparation, but do be aware that there are services which can help.

We are also happy to speak with you Winnieweg. Anytime which suits you - you can either email us or call us. Our details are in the signature below.

Jeni Jones
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707

Posts: 4
Joined: Sun Sep 15, 2019 9:53 am

Re: Four week nightmare

Postby Winnieweg » Wed Sep 18, 2019 12:26 am

Thank you, I will do that.